Just joined and seeking advice from fellow sufferers

[l-01455]

Hi. I have struggled with chronic widespread pain and chronic fatigue for three years, now diagnosed with Fibromyalgia. I have started on Methotrexate so I can be weaned off steroids, but the consultant appointments are so far apart I have no place to go for advice. My weight has ballooned and is getting me down. I have been pretty inactive now for two years. Although I often feel too tired after a day's work, I understand that exercise can be helpful for Fibromyalgia - but how much is too much, and what has worked best for others? My pain is mainly in the shoulders and backs of knees, but also rib pain if I breathe deep.

Also has anyone found vitamin supplements helpful? My mum bought me a 'natural' supplement called GOPO, which is Rosehip with vitamin C, but not sure if I should try it.

[Furry]

Hi there and welcome to our fantastic forum. You will probably get varied replies as different things work for different people, fibro is definitely not a one size fits all illness. I find do gentle stretches ( shown by physio) very helpful for the stiffness and pain, even though they can be uncomfortable to do at the time. I was so bad with fatigue earlier this year that I could not leave the house. The physio again suggested walking for a few minutes a day for five days, whether I felt good or bad, then increasing for 5 minutes for another 5days and follow the pattern every five days. She stressed not to do more even if I felt I could but stick to the routine. This helped me build a little stamina back although I can not do a lot, i can do more than before. You have CFS so I would seek help from your GP and maybe ask for a physio referral and pain clinic too. Lots of people with fibro seem to lack vit b12 and vit d I take both I also take calcium and magnesium. Please seek advice from your GP before you try anything new , you never know what might interact with medication you already take. I hope you have a supportive GP, this seems to make a world of difference. I'm sure other members will be along to give advice, nice to meet you, take care, furry X

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[l-01455 in reply to Furry]

Hi there. Thanks for your advice. I was referred for Physio and also CBT (Cognitive Behavioural Therapy) . The physio gave me two exercises to do at home and discharged me... reading some of the information online makes me think i should try walking a little first, then build it up, and maybe add swimming later.

I have mixed responses from GP and consultant, and finally got my diagnosis by paying to see a different consultant privately. My workplace have had trouble understanding my Fibromylgia Fog', put me on capability procedure because I was making too many mistakes! Thankfully my symptoms are now stabilizing, so now I feel I can tackle the weight issue. I already take Adcal-D so have the vit D & calcium supplemented, will check with pharmacist about the Gopo with my other medications.

[BlueMermaid3]

Good morning

Welcome to the forum ☺ I am glad to hear that you have finally been given a diagnosis.

Have a look at our mother site for a wealth of information on Fibromyalgia fmauk.org

As far as exercise goes it all depends upon what you can manage. We are all very different as to what we can manage and cope with.

Swimming is incredibly good. I was advised to go swimming by my GP to help my Fibro but its just too tiring for me.

It's all the undressing and drying and dressing again as well as even gentle swimming which is too much for me.

However, I do also have ME so please don't let this put you off.

Other than that gentle stretching is a good start.

I very much hope you enjoy the forum.

Wishing you less pain and more peace

Lu x

Administrator

[l-01455 in reply to BlueMermaid3]

Thanks. Nice to compare notes..

[BlueMermaid3 in reply to l-01455]

Sorry I forgot to say that my GP said even just being in a swimming pool would be good for me as the water holds you naturally.

But! I still find all the preparation and drying afer (esp my hair) too much, so I am afraid I don't go.

I do walk though. You should definitely build it up slowly though.

As Furry has said many Fibro sufferers are low in Vit D and some in Folate.

Be kind to yourself

Lu xx

[Linjack in reply to BlueMermaid3]

I have great difficulty and pain too dressing and undressing.I dread it!

[softbabe]

Hi...My GP suggested swimming which I did do...but only went a handful of times as my anxieties got the better of me. I used to sit outside the leisure centre dreading getting out of the car! Once I did get in though I was okay. So....it's all individual. I can't walk far as I hurt and look for a seat and it's so frustrating. Hope you find something you're happy/comfortable doing xx

[RoseSea]

Hello, i'm also new here so just thought i'd welcome you too.

[TheAuthor]

Hi l-01455

Welcome to the forum and it is wonderful to make your acquaintance. I personally undertake a daily 20 minute exercise regime. They are only very gentle exercises that are aimed at helping with my mobility.

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[l-01455]

Thank you all for your advice. I have been for my first gentle short walk, and looking into a local yoga class.

I had a bad night last night though, no comfortable position for arms and shoulders, even flat on my back! I see a lot of you have trouble with sleep. I take 30mg amitryptaline, which usually enables me to sleep through - maybe I am having a flare up